You can’t make this up…

So I waited, again, all day for the phone call about the knee.  I put in my reminder call at 10 this morning and again at 4pm.  I was told they would look it over after their patients.

The call came at 5:20.  It was from the surgeon’s PA who does know Meghan and has sat in on her cases from the start.  The doctor doesn’t make the phone calls- ever.  I must admit for some reason I did not tell the PA that I was holding a copy of the report as she spoke to me.  I really wanted to hear what she had to say.

Actually what I REALLY wanted, was to hear, “You have a stable AVM.”  Let’s look at it again in 6 months.  I would have been jumping up and down.  I am beginning to like ” 6 months.”

That is what I was ready for – but this is what I got…

“We reviewed your daughter’s MRI and it is normal.”

NORMAL?

“Yes it is a normal MRI.”

DO YOU MEAN THERE IS AN AVM THERE THAT JUST ISN’T GROWING?

“No we don’t see an AVM.”

THEY TOOK 5000 IMAGES (and that this point I wanted to shout that the damned report cites a 2.8 x0.7cm mass, but I didn’t) ARE YOU SURE YOU LOOKED AT ALL OF THEM?

“Yes, there is no evidence of an AVM.  I know you wanted Dr. K in Boston to review these images..”

NO, I NEVER EVEN KNEW THERE WAS A DR. K IN BOSTON UNTIL YOU TOLD ME TO CONSULT HIM! SHOULD HE REVIEW THE IMAGES?

“That is up to you.”

WELL WHAT ABOUT THE FACT THAT THERE IS A PALPABLE  MASS ON THE INSIDE OF HER RIGHT KNEE ABOUT THE SIZE OF A PEANUT?

“Oh, you should bring her in so we could look at that.”

IT HAS ALWAYS BEEN THERE!!

“Bring her in so we could look at it.”

(In my own mind…you have a CD ROM with 5,000 images.  You have a report that says there is a mass, but yet somehow you pointing to it and saying, Yep that’s a mass is going to make this better?)

I walked for about 2 hours after this call.  It took that long to shift my emotions from irate to angry.

Once again with my back against a wall, I will call tomorrow for an appointment.

Another wasted day in NYC with its pricey parking garages, and doctors that are supposed to really give a crap.  Another day of summer burned for nothing.

Starting to feel like I am in the Twilight Zone.

Thanks PTEN.  Thanks Cowden’s Syndrome.  I like you about as much as Dr. R. – and right now that isn’t saying much!

 

One thought on “You can’t make this up…

  1. Grumble grumble grumble. Keep shouting! Keep looking for different avenues to get your story out. I know we are powerful! Get it! PS I’m sorry for the ***** that are jerking you guys around. Keep fighting!

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